The VCCC Cancer Consumer Advisory Committee (CCAC) is a board subcommittee that participates in the vision and strategy of the alliance. Good governance dictates that representatives must ultimately move on and new people will join. It’s a good thing that ensures diversity, fresh perspectives, and a mix of skills.
But committee turnover comes with a cost. Relationships nurtured over many years and the hard-won nous of knowing how to get things done are not easily captured in a handover document.
How can we retain the knowledge and experience of consumers? Better still, harness it for the future growth of the organisation?
We asked our committee members.
This month two valued VCCC Cancer Consumer Advisory Committee members, Paul Baden and Leslie Leckie will leave CCAC.
Paul’s association goes all the way back to August 2011 as part of the VCCC Strategic Planning Group when building foundations were first laid.
Les joined in April 2016 as the WEHI consumer representative and assisted in much of the early VCCC Alliance strategy planning.
“The thinking is to have a process that retiring members can take up another role that capitalises on our experience, learnings, and skills we have acquired,” says Les.
Paul agrees. “There is an opportunity to train and encourage others and be advocates for health equality for all, especially those underserved groups and communities.”
We asked them where further opportunity exists in consumer engagement for the alliance.
“Gratifyingly, at the VCCC we are now moving to the next level – that of consumer leadership. We have had the opportunity to work with cancer researchers from very early in the process – prior to grant application, so we are very much on the team, not outside of it,” said Paul.
"...we are very much on the team, not outside of it."
He reflected on the changing role of consumers. “We have come a very long way. One challenge is the use of language and acronyms used by clinicians and researchers and for consumers to understand the jargon – still a way to go!”
Paul says that before he was diagnosed with cancer, he knew nothing about the health service or what a consumer was.
“Moving forward to today – being involved in a high-level consumer advisory committee where I can use my voice and lived experience to improve patient outcomes is both amazing and humbling.
“We have had some very tangible achievements. We advocated having a full-time staff member to support the committee in all the work it was undertaking, to be as effective and productive as possible in achieving its goals. Subsequently, we have structured processes and guidance that have been invaluable. The development and launch of the Consumer Engagement toolkit has enabled us to influence change in consumer engagement beyond the alliance and even the cancer sector.
Les commented that awareness of consumer engagement has accelerated in recent years and it has enabled initiatives that impact on a whole range of areas.
“CCAC has established a consumer remuneration program, an annual consumer forum, we have executive support to develop a culture where the consumer is at the centre, and we advocate at state and national levels," he said.
“In 2020, consumers were involved with over 470 distinct activities across the VCCC programs, an extraordinary level of engagement. Our whole committee is proud to have reached a point where consumers are involved in decision-making and accepted so honestly.
“In 2020, consumers were involved with over 470 distinct activities across the VCCC programs..."
“We know that substantially greater progress in improving outcomes for patients can be made through cooperation across organisations. This requires a backbone function that facilitates and coordinates that cooperation. This is a role that the VCCC Cancer Consumer Advisory Committee already undertakes.
“With a common agenda, continuous communication, and mutually reinforcing activities, we have the ability to lead cultural change in consumer engagement across the alliance and beyond.”
VCCC CCAC Chair, Sophy Athan says, “We need consumer leaders who are committed to achieving patient improvements to continue their engagement with our work. Paul and Les will be able to do that even though they are no longer on the Cancer Consumer Advisory Committee. I look forward to continuing to work with them to achieve even greater outcomes.”
Paul Baden and Les Leckie have ongoing roles with VCCC activities and are steering group members for the VCCC Strategic Program Plan 2021-24.
For more information, contact Dr Joanne Britto, VCCC Manager, Consumer Involvement e: [email protected].
Image: Leslie Leckie (third from left) and Paul Baden (far right) accompanied by VCCC Cancer Consumer Advisory Committee members, Dr Joanne Britto and Dr Dayna Swiatek, Cancer Strategy and Development, Department of Health and Human Services at a pre-COVID event.
